At first, I didn’t realize anything was wrong. They took her from me, ‘to do some routine checks’ they said. I was so tired. Sometime later a small bundle was placed in my arms. She was small, wrinkled and perfect, her large eyes gazing up at me. I don’t remember much else from that time.

A doctor came, I don’t even remember what she looked like, her words were long and hard to follow, but their meaning froze my heart. They took her from me then, they said she needed special care.

It happened so fast, my mum was there, she didn’t want to miss a moment with her first granddaughter. She was a nurse, so she asked a lot of questions about what happened and what was going to happen. Even though she was there, I felt so alone.

They let me see her, so small and so isolated, she looked cold. They told me it was her cells then, that something had gone wrong and she wasn’t making energy like a normal child would. That was the word they used, normal. She looked so normal to me; how could this have happened.

She was so quiet, barely moving, barely breathing. That’s when I realized how serious this was. My little girl, the new flower I’d brought into this world, wasn’t going to be here long. The doctors were all very calm and kept saying things like ‘this must be hard for you’. They see this every day, but they still don’t understand. For them this is a job, if this child dies there’ll be more to look after, there’s always more babies. For me, it’s my life, and I’m losing the best part of it, I’m losing it before I can watch it bloom and there is absolutely nothing I can do.

They couldn’t save my child, my little Lilly. I held her one last time. I said goodbye, goodbye to my sweet daylily.